Discussions By Condition: Eye conditions

Optic Atrophy and RSD

Hi All, I have had RSD for 17 years, I got RSD before the medical community knew what it was, it left me on "Fire" all the time and pretty swollen, all the doctors have tried local blocks and various drugs but nothing works, they tell me it's too late and the best I can hope for is to keep the pain down.

My eyesight started going bad when the RSD started many years ago, now I am almost blind due to massive blind spots, after being checked by a top notch eye doctor he tells me I have Optic Atrophy and that my nerves are 55% that of normal size, theres nothing that can be done. He told me it shouldn't get worse however I heard this years ago about the eyes when I had the semi-bad optic atrophy condition misdiagnosed by a different eye surgeon.

Now I'm pretty scared that I am going to go comepletely blind, I also want to get my vision back, training has been offered to try and use the good spots in each eye and get some vision using them, while it's definitely on the plate of things to do, I wanna know if theres something else (cost no object).

I have a clean MRI of the Plitutitary gland and the Brain if it matters, they did a type of scan of the optic nerves and thats when all the trouble was found.

As far as RSD, 8 doctors have told me Im hopelessly ruined, they tell me my brain has grown a special center to make the pain go at a faster rate as my sympathetic nerves are eaten and then regenerated, so it's RSD level 3 (visible to the eye with a pain level of 48 on Mcgill scale).

At least prior to the optic problems it was only horrible pain, now its horrible pain with minimal sight, Im still in shock, anyone have any ideas??

2 Replies:

Please go to this website http://www.rsdfoundation.org/index.html . There is a doctor in Tampa fronting this incredible procedure. Unlike you where money is no object, I cannot afford to have it done. I also have RSD. Mine is systemic. But there are videos of other people that have had the procedure from before and after. It starts at 30,000 and can go up as far as 60,000 depending on your circumstances. BUT, they have been cured. Some have even had babies afterwards. I mean they are running, they are taking cold showers. ITS unbelievable. I wish i could afford to have it done because like you i was told that I have nothing to look forward to but pain management if that is even possible at this point. Please research it. Forever your friend. Deborahannah US

If you are desperate search on Ketamine and RSD. I have researched the procedures and will provide a summary:3 Levels of Ketamine Infusion Protocals that I have read:Dr. Harbut: lowest level, works out of ArkansasDr. Schwartman: Medium Level, in clinical trials in Philadelphia at Drexel University, have gone there but the cost is out of our range since do not qualify for clinical trialComa Induced Ketamine:Performed in Mexico and Germany, Referring Doctors are Schwartzman and Kirkpatrick in Tampa at the International RSD Foundation.we have been to many many doctors. When the funds become available, we are going to start at the low doses and work up to the coma induced treatment that had been recommended by Schwartzman and Kirkpatrick.There are other doctors out there starting to investigate the ketamine option. Google it.